Recognizing Chronic Fatigue Syndrome is Key to Improving Outcomes

The government has finally issued its long awaited report on the management of chronic fatigue syndrome (also known as myalgic encephalomyelitis, or "ME"), after delaying publication earlier this month because several committee members resigned (5 January, p 7).

The report says that health professionals should recognise the condition as a chronic illness and that early recognition is key to improving outcomes.

Speaking at the launch, chief medical officer Professor Liam Donaldson acknowledged that the three years spent drawing up the report had been "enormously difficult, complex, and at some times controversial."

"I've received a large amount of correspondence about this," he said, admitting, "I'm a little surprised we have been able to get such a comprehensive and valuable report."

As the BMJ reported last week, four clinicians and two patients resigned over the final version of the report. The clinicians argued that the psychosocial side of the condition should have had greater emphasis and were concerned that "pacing"where patients limit their activities depending on the day to day severity of the conditionwas included as a form of treatment. Research into the effectiveness of pacing is limited, although the treatment is recommended by many of the patient groups and some doctors.

The patients who resigned objected to the inclusion of graded exercise as a treatment option. Simon Lawrence, coordinator of the 25% ME Group, representing people with severe chronic fatigue syndrome, said he couldn't sign up to its recommendation of cognitive behaviour therapy and graded exercise.

"Many of our patients are severely affected because they have tried these types of treatments and have come out," he said.

Even the name has been controversial, said Professor Donaldson, who said that the condition would now be known as CFS/ME. He said a referral to the National Institute for Clinical Excellence to provide guidance on management and treatment would be considered "in due course."

Despite the controversy, the report was welcomed by Action for ME, one of six groups representing people with the condition.

"It's not the end of the road, but as far as we are concerned it is a breakthrough that the government is recognising the severity of the condition," said the group's chief executive, Chris Clark.

Professor Anthony Pinching, head of pathology at Barts and The London NHS Trust and deputy chairman of the working group, said many GPs were reluctant to diagnose the condition. "If they think it might be CFS/ME, they don't know what to do. It wasn't taught at medical school, and what they have heard about it doesn't encourage them to get involved." He accepted that some patients had been pushed to do too much when they were not physically able. Treatments had to be adapted to individual patients' needs, he said.

Michael Sharpe, senior lecturer in psychological medicine at Edinburgh University and a pioneer of cognitive behaviour therapy for the syndrome, said the report represented an "uneasy compromise" between the consumer's view and the scientific view.

But he added that doctors would not accept pacing as a treatment just because it was recommended in the report. (See p 124.)

The report of the CFS/ME Working Group is available at www.doh.gov.uk/cmo/publications.htm